Living with Dying


I first saw Karen Aydlotte at a multi-stake fireside at BYU. She was the speaker. She was smiling and joking and telling us that there was a good chance she might not live much longer, that she had cancer, an often incurable form of it.

Several weeks later I met Karen through a mutual friend. She was very open with her feelings. We talked a good deal about life and death. For me, for most of us, it is easy to put the reality of death into what Shakespeare aptly phrased as “tomorrow and tomorrow and tomorrow.” For Karen death was hard reality. She had to reconcile living with dying.

The following account of her experiences is taken from my interviews with her and from entries in her journal.

1979

Today is Friday the 13th. I’ve never been superstitious before, but oh brother! You wouldn’t believe the events of the day. So much has happened that I thought I should keep my journal up-to-date for as long as I’m able—literally. Today I found out I have a rare form of cancer. I’m pretty scared. It’s hard thinking of the possibility of me dying.

As hard as it is for me, I think it is even harder for my parents, especially my father. They’re not members, and they don’t understand that dying isn’t all that bad. It’s hard for me to explain it to them. I’ve only been a member for a little over a year now, and there is so much I need to learn.

On the Sunday I went into the hospital, several members from my ward (Albany, Georgia), including Bishop Golden and his wife, came to my room and held a worship service. It was great. I love them all. Some of the members visit me almost every day. The Relief Society sisters even made me a get-well quilt. …

I found out that tomorrow I have to go to Emory Hospital in Atlanta. Tomorrow! They are going to do a bone marrow biopsy and a kidney test on me. I’m not too excited. Understandable! But, Emory is well known for its cancer research. The doctors there are among the best in the field, so I guess I should be glad I’m able to go there.

I don’t understand why this is happening to me. I live the Word of Wisdom. I’ve always tried to eat right. I exercise. I don’t blame anyone. I just don’t understand. …

I talked with Bishop Golden today. We talked about the plan of salvation. He told me I should trust in my Father in Heaven. Bishop Golden always knows what to say. He’s just about my best friend. Since I’ve been a member of the Church, I’ve been able to go to him at any time and feel welcome. “You’re better than you think you are,” he always tells me. It really helps, especially now. I can tell him anything. That’s such a relief. I have trouble letting my feelings show. I’m all smiles at church. They think I’m so strong. I wish they knew how scared I am. Sometimes I even try to kid myself about the whole thing. …

My poor bones! I had the bone marrow test yesterday. Pain! First they deadened my hip, and then they went in and deadened the membrane around the bone. After that they drilled into the bone by twisting a needle until it penetrated the inner membrane. That’s what hurt. I have to do it again Friday.

Something else happened yesterday, something nearly as bad as the bone marrow test. One of the interns came into my room while I was reading my Book of Mormon and asked me if I was a Mormon. When I told him I was, he tried to tell me how foolish I was. He was a little bitter toward the Church and told me something about a brother who had joined. I told him I knew the Church was true.

“Why don’t you call your missionaries then and have them come and give you a blessing?” he asked.

I told him the missionaries were on their way right then.

“And you really think that will help?”

I told him I knew that if my Father in Heaven wanted me to get well, I would.

“You don’t know what you have!” he shouted. He was angry. “You’ll be dead in six months no matter what you do!” When he realized what he had said, a shocked look came on his face. I asked him to leave.

When the missionaries came, they gave me a comfort blessing, but no promise. It helped, and I was able to sleep for a while, but when it came time for the operation, I was petrified. When they took me to the operating room, I walked down the hall like a zombie.

I asked one of the missionaries who visited me what he wanted more than anything else. He told me his goal in life was to get married and have a strong family. That hit me hard. That’s what I’ve wanted more than anything. I’ve planned my life around it.

I am struggling inside because I don’t think it is ever going to happen for me. I keep asking why. Why is this happening to me? I’m living the laws. I have an honest desire to do what’s right. What’s wrong with my goal to be married and to have a happy family? …

My parents are great. They are so understanding. Even though it’s a four-hour drive from my home to the hospital, they always come when I need them. Sometimes it’s not so much what they say or do, it’s just knowing that they are there and that they love me. I couldn’t make it without them. …

I’m into the second phase of chemotherapy now. The first phase wasn’t too bad, but the second phase has become a nightmare.

I receive a treatment at Emory Hospital about every three weeks and come home to recover afterward. After the first treatment the doctors told me it would take about four hours to affect me. I was told I would become a “little” nauseated and that these were the treatments that would cause my hair to fall out. I thought they meant just a little hair would come out. I wasn’t too worried.

I began to get sick almost exactly four hours later. My father told me to hold on until we got home. I tried, but I just couldn’t do it. I threw up six times before we got there. After we arrived, I went up into my room and lay down. I tried concentrating on not complaining about the way I felt. My head began to feel stuffy. It began to get worse and worse. It felt like someone was stuffing heavy pieces of lead into it. My whole body started shaking. My hands started tingling and then turned in toward my body. I had no control over them.

Sometime later I began pulling my hair out, literally, and telling my mother I just wasn’t going to make it. I told her I thought I was going to die. She kept telling me I could make it, that I just had to have faith and to keep fighting. She asked me to think of something good. I tried, but I couldn’t. I couldn’t think of anything but the pain I was feeling. …

My parents never complain about having to stay up all night with me. When I am sick, my mother is there telling me to think of something happy, to think of a field of flowers or a funny movie. It really helps.

The days I have the treatments are the darkest days of my life. After each one I tell my parents that it is the last one I am going to endure. I tell them that if it is my time to die, I am going to do it without going through all this pain.

I sometimes beg my parents for permission to die, and at night I lie in bed and pray to die. I believe my Father in Heaven won’t give me anything I can’t handle, but I wonder sometimes if he has forgotten about me. …

I have begun to hate everything about going for a treatment—the car, the road, the trees, everything. It is so bad that I throw up before I even get to the hospital. I walk into the doctor’s office sweating. I am really frightened. It seems like an eternity while I wait for my turn. I want to walk out. I think the only reason I don’t is that I feel my parents are depending on me.

During the first few treatments I was able to walk into that office as if it were something I did everyday. I’d crack jokes with the doctors and nurses. I’d do anything but let them know what I was feeling inside, but I think they knew. I think they could see the pain in my eyes.

Now I have reached a point where I won’t say anything. I just stare at the wall. I watch people going by, acting as if nothing has happened. It is hard for me to handle what I am going through. Why aren’t they hurting for me?

It makes me angry to see people wasting their lives. They aren’t learning or experiencing as much as they should while they can. I feel like screaming at them, “What are you doing with your life?”

Then I realize that I was once the same. That really hurts. …

There is a hammock in our backyard. After treatments I sit in that hammock most of the day just feeling sorry for myself. I look up at the trees and think, lucky trees. Trees don’t get cancer. I look up at the birds. Lucky birds. They can just fly away from their problems. I wish I could fly away.

On one of those days after I’d been sitting on the hammock crying and feeling sorry for myself, I went into my house and watched television. The Jerry Lewis Telethon was on. The parents of children who had multiple sclerosis were telling what it is like to have a child with the disease. Most of them talked of the hope they had for a cure for their child’s condition. One woman, however, said she didn’t have any hope that her child would even live much longer, but she said that she was going to love her child as much as she could as long as she could. She also said that her family had grown tremendously from the experience. They’d learned not to let sorrow drown out their happiness.

I was so mad at myself. I was bitter. I had so much to be thankful for, and I was wasting so much of my precious time. That little boy seemed so happy. He was smiling, and his parents also seemed happy. I’m sure they felt pain because they knew they were going to lose their son, but they weren’t letting that get in their way. They were making the most of every minute they had with him.

I realized then that it doesn’t matter how much time I have left. What is really important is what I do with what I have. I decided to fight to the end.

That’s when I started exercising. I do sit-ups, and I run in place until I collapse from exhaustion. I try to run the illness out of me. I am not going to let it beat me without a fight. Maybe it can destroy my body, but not me, not what I am inside. I am going to run and leave the cancer behind. I am going to make myself so healthy that nothing bad can stand to be in me.

I fall down often while I am jogging and running in place, and I sometimes think that I can’t keep it up. I pity myself for a few minutes, and then I get mad at myself, and finally I get back up. Sometimes I can only walk until I build up enough strength to run again.

The other day when one of the nurses at Emory took my pulse, she was a little surprised. “What have you been doing?” she asked me. “I’ve never seen a pulse like this in anyone but professional runners.”

I told her I am a professional runner. She laughed, but I was serious. It is a race between me and the cancer. We haven’t reached the finish line, and in a lot of ways I am wearing down, but I am still running, and I’m not about to stop. …

I would like to say that running made the last treatments easier, but it didn’t. I have had my last treatment, and it was the very hardest for me. It seemed like the effects were doubled. I felt like I was being raked through hot coals one more time and that someone had deliberately put twice the amount of coals on the fire.

During that last treatment, my father sat on my bed and put cold compacts on me. The treatment magnified everything. I didn’t want anyone to even touch me. Just being touched hurt. When my father put the compacts on me, I wanted to yell at him and tell him to take them off. But I could see in his eyes how helpless he felt. I realized how much he needed to feel that he was helping me in some way. It made me feel good deep inside to know that he was feeling better because he was helping me. Sometimes you have to take to give.

Now that I’ve finished the chemotherapy treatments, the doctors tell me that I should take it easy, but I can’t. I have started taking long walks. On one of those walks I was looking at flowers and plants that grew wild on the side of the road, and I thought of how they die in the winter. When they come back in the spring, they seem even more beautiful than before. More than ever I realized that all I need to do is to have faith in my Father in Heaven. I know that if I do, everything will, in the end, be all right.

1980

The cancer is in remission. I get to go back to BYU in a few days. Hey, I’m even looking forward to taking tests! Nothing about living can be bad unless you let it be.

I have learned so much. Sometimes it seems that I’m not even the same person I used to be. I used to be afraid of anyone who was different from me. I work at the Morris Center cafeteria, and it is one of my jobs to help people with a handicap carry their trays to the tables. But I used to be so afraid of them that when I saw someone with a handicap coming, I would go to the other end of the cafeteria. One of the other workers would have to help.

One day that didn’t work. There were people with handicaps at both ends of the cafeteria. I had to help a blind boy to his table! What do I say? I thought. Should I act as if there’s nothing wrong? Well, here goes. When he asked me my name, I just about died. I forgot it, and then when I remembered, I said it in a cracked voice.

That’s the way people acted, even close friends, when they found out I had cancer! What do I say? Will she start crying? Everyone either went the long way around, or they acted like nothing was wrong. They would forget that I am a person. Sometimes it was funny, especially if they thought my illness was contagious, but mostly it just hurt. I don’t want to be treated any differently from anyone else.

I began to understand how handicapped people must feel. There is a guy named Skip in my psychology class. He is blind. Everyone used to take the long way around him. One day I sat next to him. He said hello and put his hand out. I gave him mine and said, “Hi, I’m Karen.”

Now there are a lot of people who sit by Skip. He’s a great guy. He likes to tell blind jokes, like “Don’t leave me in the dark.” Or he will tell us about the blind date that he had over the weekend. I’ve missed out on so much because I’ve been afraid or because I didn’t take the time to understand.

1981

I’m home again. Things are not going well. The cancer is back, and Tuesday I’ll be leaving for Minnesota for a bone marrow transplant. I’m not excited about it, but it’s the only hope I have. …

I’ve been in Minnesota for a couple of days now. The doctors have killed most of my diseased bone marrow, and because of that I need blood platelets and white cells. I don’t know anyone here to ask to be a donor, so I had the doctor call the mission president. Within just a few hours—can you believe it!—there were more than eight people here waiting to be typed. My doctor was amazed, and I was just thankful. It isn’t like giving blood. They had to sit by a machine for several hours while their blood was pumped out and stripped of the materials I need.

None of them even knew me, and some of them drove as far as 60 miles to help me. The Church is like a big family for me. I know I can depend on the members for help anytime I need it. It’s a good feeling.

My brother is going to be the donor for my transplant. I’m grateful that his marrow is compatible with mine and grateful he is willing to give it to me. It’s a big sacrifice. I really love him for it.

During the operation they are going to kill the rest of my bone marrow and then give me some of my brother’s healthy marrow. If the transplant doesn’t work, I’m in a little bit of trouble. It’s a chance I have to take. I don’t have a choice, not if I want to live. There is so much I want to do, but if I don’t make it, I’m grateful for what I’ve had. I have so much to be thankful for: my family, my friends, the gospel.

I still don’t know why this has happened to me. I guess it really isn’t important. What I do know is that I must trust in and obey my Father in Heaven. I know that in the end, everything will be all right. One of the beautiful things about the gospel is that no matter what happens to us, as long as we have faith and as long as we are obedient, we have hope. I wouldn’t wish what I have experienced on anyone, but I do wish that everyone could feel what I feel about the beauty of life, about the value of living every day as completely as we can, and most of all, about the beauty and strength the gospel can bring to us.

Editor’s note: Karen died in the fall of 1981.

[illustrations] Illustrated by Preston Heiselt

[illustration] Karen took the world pretty much for granted, until she found out she had cancer. Suddenly everything seemed barren and threatening

[illustration] Rather than dwelling on the pain and wondering, “Why me?” she learned to look for happy moments and to savor every minute of her time

[illustration] Faith and trials work together, she finally discovered, in unveiling the beauty and strength of the gospel